anyway thought I would share a few pics and a bit about how the boys are doing and things in general.
This is a shot of Noah looking at the hospital. The other day he had a runny nose and was not able to do his Occupational therapy but since my wonderful daugther was off work that day she came with and they went on an adventrure in parts of the hospital where they would not run into any of the therapy kids that can't be compromised and I was able to take Jeremiah to PT. Noah still will not stay with anyone without me there, and at home it goes into a dangerous fit and noone can handle him. BUT if he can leave me then most times goin on an adventure with select people works for a SHORT time, but once he decides he wants me then all bets are off. This day J session was only an hour so it worked out quite well.
Later the same day Jeremiah had a screening at the schoolboard because soon he will be getting services through the schools here at home in addition to our therapy at the hospital depending on what they decide he needs. Noah and Celeste hung out in the van and she took this picutre on her phone. He had cried and cried when I left them in the van and she had jumped through hoops to get him happy :) it worked and she was quiet excited :)
This is Noah on the adventure with Celeste at the hospital
Noah got Candy land and chutes and ladders for Christmas! Daddy is playing candy land with him here, IN HIS RECLINER! LOL with Noah standing beside the chair and playing. Silly but they had fun :)
This is a picture of the back of my hair! It gives me fits with tangles and all and tryin to figure out ways to care for it better. It is layered a bit with long layers but it tangles and usually up by my scalp. I threated to shave it bald but of course thougth better of it. I was never really taught alot of self care or primping or anything so I am feeling at a loss with alot of things but wanting to look more pretty and feminine even with my weight :( sigh I am also battling very very rough feet and elbows. Never had these issues before but at 42 I guess my skin is changing.
Put this picture up because I got a Bunco Game for Christmas in my stocking from Santa! I tried a few times to go to Bunco with a group of playgroup ladies but its really hard for me because of Noah and then on top of that the couple times I have been I was just not real comfortable. Anyway love the game and hope to have friends in from time to time to play it with a group like its meant to be played but you can do it with as little as two. The added bonus of it is basically you roll dice, there are different things you roll for each turn and all but Noah loves the game and beats us quite often! LOL he rolls and we keep up with what he is rollin for and he never really understands at this point what he is rollin for but he rolls and is happy whatever comes! LOL We play mexican train as a family too and Noah partners with bobby. We use to play alot of skip bo.but that is more to play without Noah as he can't really figure that out, but I guess he can play as a partner maybe :) We dont do family game night as often as we should but we are getting better at it. I want Noah to have memories of those nights for his lifetime. We set Jeremiah up in his high chair at the table and he hears all the activity and at times will smile so hard when he hears someone say YAY or bunco or yatzee! LOL We always have music on in the background and he enjoys that too :)
Jeremiah has a milk study done on Monday. The ENT wanted to know for sure if he was still refluxing and both ENT and I felt like he was based on his coughin, retching, choking and such that he does. Durin the test he did not do ANY of the above. BUT they assured me the test will show reflux even if he is not doing anything at the time. they are also lookin at the delayed emptying. Well, I still have not heard back from the doctor myself on the results but when we were at the ENT yesterday he got the results from Dr. Brown's Nurse on the phone for the reflux part of the test and it was NEGATIVE for reflux. I was shocked. But they say for sure he is no longer reflyxing. The Nissan Fundo surgery is doing its job. So the ENT is even more convinced than ever that Jeremiah's adnoids and tonils need to be removed. The adnoids are blocking the back of his nose and causing increased mucous and swelling and lowered o2 sats. He thinks all the choking, wretching, etc is all from this issue. I AM NOT excited about them doing surgery but was told they have to come out. The problem with this is that because of Jeremiah and his fragile state and all that has happened before they will put him in Pediatric ICU for a week after the surgery. It is very dangerous for him and it scares the snot out of me! But the doctor says evenutally that they have to come out and the longer we wait the worse the issues will be and more danger :( sigh Daddy also is like they need to come out honey! Well, the ENT Dr Hollier, will not consider doing the surgery unless Jeremiah's Intensivist Dr. Eddleman that took care of him in PICU before is the one caring for him. DR. E went off service today and will not be back till February 13th. So for now preop is sheduled for Feb 14th (Happy Valentine's Day) and then surgery is Feb 18th and he will be in Pediatric Intensive Care Unit for a week. PLEASE PLEASE be praying for him and for all of this. Dr. Hollier (ENT) did say that he would postpone and not do it if for some reason Jeremiah is not in tip top shape at that time. We have to do everything we can to keep him WELL around the time of the surgery. We do not need anything that will comrpomise him or put him in more danger. In addition to prayer for Jeremiah to do well, and safety and a recovery and an easy one and all, PLEASE pray for NOAH. Our family will move into the hospital again for the week but there will be alot of time Noah will be away form me like before :( He will be able to come in for visits and all to see me and Jeremiah and at night I will have to come out and get him to sleep and all but it will be rough, maybe even more rough than last time because he will remember that. The good thing is we are at the hospital soooo much that Noah is quite comforatble there! LOTS OF PRAYER NEEDED across the board.
This is a shot of my silly panda boy Noah. can you see the excema on his face :( it is SOOOO bad right now. We have tried EVERYTHING under the sun in the 2 years he has been home and at times NOTHING helps at all. Sometimes it is MUCH worse than others, now it is worse than it has EVER been. We went to pediatrician again yesterday about it. Tryin a few new creams so we will see how it goes. poor guy. I feel SOOO bad for him! She mentioned possible psorisis which I have no clue what that is but I need to find out. If this does not work then we go to a new dermatologist cuz I wont go back to the last one :( He is defintly growin though. He is a WHOPPING 35 lbs at 3 years and 9 months old! They did not do height so not sure on that. He was wearing clothes and crocks so might be a bit lighter but still wow!
a rare smiley shot. He wont smilie when I am tryin to take pics . ugggh
another rare smile, he does not smile on command and somedays he does not smile at all and others I am so blessed with a face like this :)
Here is Jeremiah getting cuddled by Lisa his PT after takin him out of the gait trainer! We are so blessed to have PT that loves him so much :) and has become a friend as well! Doesn't he look BIG sittin in her lap! He is about 32 inches long when we measured him in the stander at therapy and yesterday at pediatrician weighed in at 25 lbs 7 ounces with diaper and llng sleeve onsie on!
Some things are just inborn. We were blessed to be treated out to eat a few times lately at asian restaurants and Noah wants to use chopsticks like Daddy and Jei jei so we let him try. Remarkably for a 3 year old he does not do half bad! I mean far from perfect but way better than I think most 3 year olds would do.
My sweet mamma was with us this day. She is still livng here with us and doing amazingly well for her 67 years young! I worried so after she had to have her hip replaced but she is a thousand times better than before and much more active. She still has her ankle issues from the crushing of it over 20 years ago and I so wish it had gone as well as the hip did. She likes to go out to eat and wll take me and the children out to eat a couple times a month usually. on the 4th is her day to shop and get out and she gets quite frustrated if something happens or therapy falls on that day and she misses it! LOL We just dealy a day but its the end of the world to her! Last month therapy fell on that day in the morning so she came with us and read in waiting room and then the day progressed.
Frogie boy Jeremiah is still VERY aversive to food or even really bein touched around month and at times on his face at all. BUT on rare occasions while I am TRYING to feed him he will decide to have a smiley day and like it. Got a great shot here of one such day. I WORRY so much about the upcoming surgery knocking us back again because he will be on the ventilator again for awhile :( That is what caused all the issues to begin with. sigh, another reason I guess to go ahead and get it out of the way now. If I could just get the fear of him not making it out of my mind :(
I am beyond excited to share that our family will have a real vacation this year! We will be going to Great Wolf Lodge in Texas with a bunch of other families who have adopted children from Taiwan! :) This is the first annual family reunion of all of these kids! I CAN"T WAIT! We pray to do it EVERY year somehow, someway! We have researved our room at the amazing group rate that has been givin our group :) and will be going a day early and staying somewhere else in town to give us a bit of time to relax before all the festivites begin and allow Jeremiah to recoup for the trip an dall. Drive will be about 4 hours or so. and that does not count havin to stop for diaper changes, and if Jeremiah has to be calmed down or antyhing. I will be meeting friends I have known and loved through computer and watched them on their journeys to Taiwan :) I can't wait. I MIGHT be blessed to see again the couple that we shared our Gotcah Day with if it works out for them to come. And maybe see another sweet girl I prayed so hard for a family and met her in Taiwan and had the pleasure of coming to love her family too :) And one of my dearest friends on the planet is for SURE COMING! I can't tell you how excited I am for that! and several others are for sure or posibly coming! It will be the most amazing thing to meet everyone face to face! If you are a family that has or is in the process of adopting from Taiwn then PLEASE get in touch for details on all of this great reunion :)
Well, I will close for now as I got a bit long winded! Will try to be around a little more between this and my journey to a better me blog!